Struggling Newbie

Interests:married, Mom of 3, research scientist, WoW addict, newly diagnosed with N+C after >20 years

Posted 10 November 2012 - 11:47 PM

Hi,

I am a 41-year-old married, mother of 3 young girls recently diagnosed with N + C although I've had symptoms since I was a teen. My cataplexy (if I have it) is very subtle though my doctor is convinced its there. I am struggling to come to terms with all this. My first issue is accepting the diagnosis. I am still questioning whether we got it right. My sleep study was a wash since I just couldn't sleep, so my doctor basically diagnosed me off symptoms only. I certainly have EDS, which makes every day a struggle to just keep putting one foot in front of the other. However, my "sleep attacks" are not uncontrollable, although they are pretty unpleasant. I don't just fall asleep in the middle of doing something. It's always a very strong urge to sleep, a fervent wish that I could go to sleep, but it's been just a few rare times in my life that I've actually lost the battle and fallen asleep unwittingly. I'm pretty certain I have SOREM, at least I'm almost always in a dream right away. I am not sure about the HH. I have vivid visions while my eyes are closed, but I know they are not real. I never float around my room or see things while my eyes are open that aren't there. I do sometimes feel a presence in the room, and that's something I remember as far back as childhood. I have to will myself to stay calm because my rational side knows it's not real. But the feeling persists until I'm totally asleep. I recently bought a Zeo to track my sleep at home, mostly because I find this fascinating even as I struggle to cope with it. Here's what my Zeo says about me on an unmedicated night:

My doc started me on Xyrem right away, and I've now been taking it for around 6 weeks. I have had a few really amazing days - I didn't know you could actually feel AWAKE! - but mostly I've been struggling to get the dose right. Does the fact that Xyrem has helped give any credence to the diagnosis? How would a "normal" person feel if they took it? What do you guys think about my diagnosis? And how in the world do you cope with being so alone? Nobody else I know is like me, so there's nobody else I can really talk to about it. I have sympathetic friends and a very sympathetic husband. But I feel so isolated, and I don't know that anyone else really understands.

I'm sorry for my first post here to sound so needy. I am normally a very rational person (I'm a research scientist), and I'm normally pretty good at accepting & moving on to the solution phase. But this one has me stymied. I would appreciate any thoughts you guys have on the diagnosis and my questions above.

You sound like a classic case of Narcolepsy to me. My sleep attacks rarely cause me to fall asleep uncontrollably, and in fact that is the norm. You also clearly described the type of hypnagogic hallucinations that I have. Unlike most I have never found them to be disturbing or scary. I had cataplexy a few years ago when I was dealing with post traumatic stress. Apparently anxiety is my only trigger,and in my normal life I am just not an anxious person. My cataplexy was actually quite subtle. I didn't have any idea what it was at the time. Have you ever been doing a mundane task, and suddenly realized that you could not remember several minutes. Then when you looked at what you had done during that time it wasn't quite right, and you had to redo it? I have had this type of automatic behavior many times.

My situation is somewhat similar to yours. Even though I have all of the classic symptoms of Narcolepsy I only entered REM once during my MSLT. So my official diagnosis is actually Idiopathic Hypersomnia.

Your sleep architecture looks very similar to mine, though I generally don't wake to the point that I am aware very often. The fact that Xyrem is helping you points to the fact that you were not getting enough slow wave sleep. It's possible that even with the "right" dose of Xyrem you may still need some sort of stimulant on those days that you are still overly sleepy.

Interests:married, Mom of 3, research scientist, WoW addict, newly diagnosed with N+C after >20 years

Posted 13 November 2012 - 11:18 PM

Hi MINItron,

Thanks for the response, it makes me feel better to hear about someone who is kinda like me.

The automatic behavior is an interesting question, and I've thought about this a lot. I do get into a "zone" where I'm just robotically going through a motion (entering data usually), and when I'm done I can't exactly remember what I did. But I don't often make mistakes - or at least I don't find them! I think the reason is that I always set up a whole process of exactly what I'm going to do in such a way that it doesn't require thought. I make it almost fool-proof before I start. I take it slow for a few minutes, making sure my brain/fingers/eyes know what they are supposed to do...and once I'm certain they know the pattern, then I just zone. I have no idea if that's automatic behavior or not. Sometimes I make mistakes, but not often as long as it's all set up so that no real thinking is involved.

The cataplexy I've also thought about alot, and I'm still not sure. I have more general clumsiness, dropping things, sometimes a knee will give out, but none of that is associated with emotion. I have developed a phobia of walking down stairs without holding onto the rail because I've had enough near misses. I will NOT go down a flight of stairs if I can't hold the rail. Ugh, that makes me sound like an OCD loony person. I read somewhere during my Googlings that cataplexy can manifest as an inability to physically perform under pressure. That certainly describes me, but I don't think that is a problem that's specific to narcolepsy. In any case, for me, it's the reason I quit sports in high school. I'd be fine during practice, but I sucked bad during games. If it was up to me to make the winning shot, and they put me right at the goal with nobody else around...I'd still screw it up every time. I play piano, and I play just fine until somebody listens. Then I can't hit the right notes to save my life. My fingers jerk all over the keys, and it's a real struggle to even play. The only other thing I can think of that's emotionally-related is that when I feel something very strongly, I just shut down. My brain doesn't work, and I can't think or speak properly. But I don't usually feel like I have to sit down.

So I'm left with questions about the microsleeps, automatic behavior and cataplexy. But my brain sure seems to like its REM sleep!!! And the Xyrem is definitely helping me get more deep sleep. I can see it with my Zeo, and (even better!) I can feel it physically. My body is finally waking up after being asleep (almost literally ) for 20 years!

The cataplexy I've also thought about alot, and I'm still not sure. I have more general clumsiness, dropping things, sometimes a knee will give out, but none of that is associated with emotion. I have developed a phobia of walking down stairs without holding onto the rail because I've had enough near misses. I will NOT go down a flight of stairs if I can't hold the rail. Ugh, that makes me sound like an OCD loony person. I read somewhere during my Googlings that cataplexy can manifest as an inability to physically perform under pressure. That certainly describes me, but I don't think that is a problem that's specific to narcolepsy. In any case, for me, it's the reason I quit sports in high school. I'd be fine during practice, but I sucked bad during games. If it was up to me to make the winning shot, and they put me right at the goal with nobody else around...I'd still screw it up every time. I play piano, and I play just fine until somebody listens. Then I can't hit the right notes to save my life. My fingers jerk all over the keys, and it's a real struggle to even play. The only other thing I can think of that's emotionally-related is that when I feel something very strongly, I just shut down. My brain doesn't work, and I can't think or speak properly. But I don't usually feel like I have to sit down.

So I'm left with questions about the microsleeps, automatic behavior and cataplexy. But my brain sure seems to like its REM sleep!!! And the Xyrem is definitely helping me get more deep sleep. I can see it with my Zeo, and (even better!) I can feel it physically. My body is finally waking up after being asleep (almost literally ) for 20 years!

All the best,Cira

I know that the cataplexy that used to have was a weakening of my left knee. It would cause me to stumble if I wasn't holding on to something. C can also manifest as mutism and the inability to think properly. The trigger for everyone is different, and can be very, very subtle. The description of "just shutting down" sounds very much like some of the cataplexies I have heard described.

I know that the cataplexy that used to have was a weakening of my left knee. It would cause me to stumble if I wasn't holding on to something. C can also manifest as mutism and the inability to think properly. The trigger for everyone is different, and can be very, very subtle. The description of "just shutting down" sounds very much like some of the cataplexies I have heard described.

Can cataplexy come in the form of having difficulty thinking clearly, forgetting words, not being able to communicate thoughts, etc? Since I've been pregnant and off my meds (gave birth 4mos ago), I just feel so spacey and sometimes I know what I want to say but it comes out jumbled and it takes me several times to get it right. I also forget simple words when talking to people. Like I have to sit there and say, "I know what I'm talking about but I don't know how to describe it," or "the word is ___!" and just gesture with my hands to tell them I can't remember the word for it. This just started happening during pregnancy and hasn't gotten better since birth. If anything, it's gotten worse. I do also have moments where I just feel so exhausted where I'm afraid I'm gonna drop my baby. I feel so weak all the time.

Can cataplexy come in the form of having difficulty thinking clearly, forgetting words, not being able to communicate thoughts, etc? Since I've been pregnant and off my meds (gave birth 4mos ago), I just feel so spacey and sometimes I know what I want to say but it comes out jumbled and it takes me several times to get it right. I also forget simple words when talking to people. Like I have to sit there and say, "I know what I'm talking about but I don't know how to describe it," or "the word is ___!" and just gesture with my hands to tell them I can't remember the word for it. This just started happening during pregnancy and hasn't gotten better since birth. If anything, it's gotten worse. I do also have moments where I just feel so exhausted where I'm afraid I'm gonna drop my baby. I feel so weak all the time.

It most certainly can. Cataplexy is the result of REM intruding into your wakeful state, and is caused by stress of some kind. It can cause sudden temporary brain fog or inability to speak. That is unfortunate as I am currently a military instructor. The only saving grace is I generally don't any problems when I am teaching, though it does happen from time to time. I only have a few months before I transfer back to a squadron and then I get to deal with the fast paced, stressful lifestyle again. At least I know now why I have the issues that I have.

Can cataplexy come in the form of having difficulty thinking clearly, forgetting words, not being able to communicate thoughts, etc? Since I've been pregnant and off my meds (gave birth 4mos ago), I just feel so spacey and sometimes I know what I want to say but it comes out jumbled and it takes me several times to get it right. I also forget simple words when talking to people. Like I have to sit there and say, "I know what I'm talking about but I don't know how to describe it," or "the word is ___!" and just gesture with my hands to tell them I can't remember the word for it. This just started happening during pregnancy and hasn't gotten better since birth. If anything, it's gotten worse. I do also have moments where I just feel so exhausted where I'm afraid I'm gonna drop my baby. I feel so weak all the time.

I bet the latent pregnancy hormones are causing more frequent sleep attacks. I've heard women on their period have it real bad with N sometimes, so I imagine actually being pregnant must be rough. Good luck.

It most certainly can. Cataplexy is the result of REM intruding into your wakeful state, and is caused by stress of some kind. It can cause sudden temporary brain fog or inability to speak. That is unfortunate as I am currently a military instructor. The only saving grace is I generally don't any problems when I am teaching, though it does happen from time to time. I only have a few months before I transfer back to a squadron and then I get to deal with the fast paced, stressful lifestyle again. At least I know now why I have the issues that I have.

I am newly diagnosed with N. I very much have problems completing the most normal of sentences. It's a huge embarrassment at work since it makes me look like I have no idea what I'm talking about. I do!! I just can't find the words. I didn't think I had the cataplexy symptoms... I'm sure my neurologist thinks this a well. Do I need to bring this to his attention? There are so many things I feel like that COULD be linked to the N. I just don't know where to start. I feel like a broke mess that needs to be put back together!

The automatic behavior is an interesting question, and I've thought about this a lot. I do get into a "zone" where I'm just robotically going through a motion (entering data usually), and when I'm done I can't exactly remember what I did. But I don't often make mistakes - or at least I don't find them! I think the reason is that I always set up a whole process of exactly what I'm going to do in such a way that it doesn't require thought. I make it almost fool-proof before I start. I take it slow for a few minutes, making sure my brain/fingers/eyes know what they are supposed to do...and once I'm certain they know the pattern, then I just zone. I have no idea if that's automatic behavior or not. Sometimes I make mistakes, but not often as long as it's all set up so that no real thinking is involved.

You are probably right that your "zoning" is automatic behavior. I believe I do this same thing, and have even found myself places I don't remember driving to. Granted it was mostly something like from work to home, but it's still unerving to be in your driveway and think, "I don't remember driving that far" and if someone had asked me what route I took home I wouldn't have been able to tell them. Although I did have a couple of experiences where I was suddenly "lost" while I was driving. I didnt' know where I was, it was like I was expecting to be one place and was actually another....I had to pull over and calm myself down enough to recognize the area I was in (an area I have traveled many times by the way and should have immediately recognized). I was never "asleep" with my eyes closed, I wasn't swerving or driving weird to "wake" me up.....I just suddenly was "aware" and did not know where I was. I seriously felt like I had been abducted by aliens or something because I didn't remember even heading in the direction of that area and it seemed like someone paused me, placed me in that spot, then hit play again. It was a very awkward feeling and of course made me feel like I was endangering myself and others. Also I would sometimes end up going the wrong way....for instance I am supposed to head to the store which is a right turn, but instead I turn left like I am taking my husband to work. I cannot tell you the number of times my husband has said "where are you going?" and I have replied with "Oh yeah sorry I was on autopilot". And again I do the same thing with different tasks, which is maybe why I like repetitive tasks so much. It allows me to "zone" and it probably allows my brain to cheat and "sleep" a little. Anyway, I'm not a doctor or N expert, but I think that what you mentioned would qualify as automatic behavior.

I've done the same thing many times. I have a long commute to work--about 40 miles, one way--and there are plenty of times when I'll reach a certain point in the drive and suddenly realize that I don't remember anything of the drive up to that point. I don't think it involved microsleeps or anything of the sort, because I'm in traffic on the highway or on a winding, hilly road, and I surely would've wrecked my car. And there've also been many times when I'll be driving somewhere--to work, to the store, wherever--on a very familiar route, and suddenly have no idea where I am, not recognize anything around me, even though I see it on a daily basis. I've always just kept going, thinking there's no way I could be anywhere I don't recognize, until I did start to recognize where I was. I never attributed that to the narcolepsy, before, so I find it very interesting to hear that other PWN have the exact same issue. I always just figured I was crazy.

Looking at your study makes mine seem way worse than it really was. I did rise to a wakeful state over 100 times in 5.5 hours while managing a mere 35 seconds of stage 3 deep sleep.

In my MSLT, time to sleep average was under 3 minutes with time to REM immediate. I hit immediate REM 3 of 5 times. I woke from the last nap about 5 or so minutes after they thought I was awake, now that was quite a hallucination!

In reality, my symptoms are not unlike yours however. Auto behavior while talking in person and on the phone, while in meetings and most disturbing, while driving. Some call it a sleep attack. For me I go from reality to "dream state" without knowing it until reality kicks back in. Scares the hell outta me.

True story, according to my mother: When I was 3, my mother became pregnant with my little brother. I naturally asked her where babies came from. She told me, first, that she found my sisters under a cabbage leaf where the stork had left them, but she found me under a UFO. Then she laughed and gave me the story one gives to three-year-olds ("When a Mommy and a Daddy love each other very much, they make a baby in Mommy's tummy"). According to her, my answer was to smirk, put my hand on my hip, and reply (rather imperiously), "Mo-ther, the first story was more believable." And then roll my eyes and walk away.

I was, apparently, rather a precocious little ... witch.

Many, many years later, when an MRI found a "non-ferrous object" (shaped like the Nike "swoosh" logo) in her brain, we decided it was an alien tracking device that had started malfunctioning, thus causing the headaches that led to the MRI.

Yeah, we're weird. But, on a more serious (and on-topic) note:

N50+ said:

Auto behavior while talking in person and on the phone, while in meetings and most disturbing, while driving. Some call it a sleep attack. For me I go from reality to "dream state" without knowing it until reality kicks back in. Scares the hell outta me.

My sleep attacks have always been of the sort that I didn't know they were happening. I was getting in trouble at work for falling sleep at my desk, and arguing with the shift supervisor that I wasn't sleeping. He'd come by my desk, tell me to wake up, and I'd be mad about it because, as far as I knew, I had just been sitting there watching the screen--which is 99% of my job. I didn't feel like I'd fallen asleep, I didn't know I was asleep, and I didn't feel like I was being woken up. I apparently was dreaming my computer screens, one of which I spend a great deal of time surfing the 'net on, so anything unusual that came up, I put down to the fact that I was surfing the 'net. It never occurred to me that there could be anything else wrong until, after one big blowup between the supervisor and I and after the supervisor had stormed off, one of my co-workers came over to my desk and quietly told me that, yes, I had been sleeping.

In another incident, a couple of days later, the same supervisor came over and told me to come to his office. I walked in, he told me I'd been sleeping again, and he had a report all written up for it. I told him I didn't know what he was talking about, that I didn't feel like I was sleeping, but promised to call my doctor the next morning. When I got back to my desk, I found an email he'd sent me 30 minutes earlier asking me to come talk to him when I woke up ... and despite the fact I'd been "looking at the monitor" all that time, I'd never seen it. That convinced me more than anything else, and set me on the road to diagnosis.

One of the things I kept emphasizing in all my doctors' visits was that I couldn't tell I was falling asleep. I didn't think I'd done it while I was driving, because I hadn't wrecked my car, but I was flat terrified that it would start happening when I was driving. I have, however, always been very careful. If I'm the least bit tired, I won't drive without taking a nap, followed by a walk around my car a few times, first--and sometimes again at the halfway point. And if that isn't enough, I'll call someone to come get me. That may be the only thing that's kept me from wrecking my car.

Maybe I was just better at seeing the signs while I was driving, because I didn't start driving until I was nearly 30. Before that, I lived and worked in easy reach of public transport, and it was cheaper than owning a car, so I never bothered. Once I moved out into the country, though, I had to start driving. Perhaps coming to it so late made me more wary of anything that might affect my driving than someone who's been doing it since they were a teenager ... I don't know. Perhaps it helps that I have to really think about what I'm doing when I'm driving, because I have a lazy eye and I have to actually think about it on some level in order to have any depth perception at all. And sitting at my desk for hours on end staring at a screen requires no thought or concentration at all, so it was easier to miss the signs.

I have had other instances of automatic behavior, but I've had those pretty much all my life, so I never really realized that they weren't normal until now. It's amazing how, once you have that diagnosis, you suddenly see things that seemed perfectly normal to you before in a whole new light.

My mother was notorious for "sleep" talking..and I am too. I would continually get in trouble when I was little because my mom thought I would go places without telling her even though we had a specific conversation about where I was going and what time I would be back. She almost called the police to report me missing one time even though I asked her permission to go to a friend's house. After a while I would make her get up out of the bed, talk to her about a few other things to make sure she was awake, and then ask her for permission, and then confirm her permission by stating it back like "Okay you have just agreed to let me go to BLANK, and I will be back at BLANK". Even that didn't work sometimes....she got really good at sleep talking. I am the same way...I am also really bad at a different type of sleep talking that confuses even me to this day. Someone can "wake" me up to ask me a question, which I remember completely and remember my response as well, but it seems the response I remember is not the same the awake person heard. The most glaring example I can remember (because I argued with her over it later) was my mom asking me where a specific piece of paper was. At the time I had a bunk bed with a desk underneath, and the paper was lying on top of the desk. This was how I remember it playing out:

Mom: Where is that paper?

Me: It's on the desk

Mom: Its where?

Me: It's on the desk

Mom: Im looking for that paper

Me: ITS ON THE DESK!

Mom: I'm sorry where?

Me: OH MY GOSH ITS ON THE DESK MOM! RIGHT THERE! ON THE DESK!

I was seriously mad that she wasn't understanding my simple instructions. However when I finally got out of bed later my mother again asked me where it was, and when I asked how she could not understand the phrase "the desk" in a sarcastic voice (I was a teenager) she explained that the conversation we had went like this:

Mom: Where is that paper?

Me: It's in the sandbox.

Mom: Its where?

Me: It's in the sandbox

Mom: Im looking for that paper

Me: ITS IN THE SANDBOX!

Mom: I'm sorry where?

Me: OH MY GOSH ITS IN THE SANDBOX MOM! RIGHT THERE! IN THE SANDBOX!

It was just completely strange because I remembered the entire conversation and knew I was "awake" and responding to her. We still laugh about it to this day, but it also made me wonder what else I had been "telling" people that I don't know. :0